My lessons learned about idopathic non-diabetic peripheral neuropathy

Sorry to hear of you circumstances. I don't normally respond to messages but you resonate with me. Please check with the regular weight lifts that are recommended. You are no longer "regular" and need to recalabreight your weights. Please continue your use of weights. Only you can determine what is apropriate. Steve

It’s so hard to explain to people why I can’t do normal self improvement activities that involve repetitive movement. My muscles will tighten up in response to pain or the muscle irritation that is necessary for tightening, toning and building muscle. Then I will have knots and trigger points that cause so much pain. Pain leads to terrible fatigue ( in my case) which then leads to depression, as I stay inside and take naps during the day, trying not to further aggravate my sore body.
I’m not talking about running a marathon, or playing pickleball ( agh! The thought of it!). I’m talking about pushing my lightweight mower (arms), walking too much in a large building like stores or church (legs, hips, back, knees, ankles), swimming laps (arms, ankles) … etc. I would love nothing more than to head out my front door and go for a brisk walk. Oh the pain, and resulting misery.
Dry needling is my new temporary relief. But I pay the therapy business $85 per session, and that only serves one area of my body. I have to choose. Last week I chose the backs of my upper arms, and shoulders, because I was having trouble even shampooing my hair. The PT said my biceps were completely tight, not just the usual knots. Relief, but of course the pain and tightness will return.

Julipat - I sympathize and understand your challenges. Stay Strong. Have you tried using a certified acupuncture specialist. One that has had many years of training--- not a chiropracter. Utube has info on acupressure...this may help to ease discomfort. Just some thoughts. Like the poster with the cat said "hang in there"

1. There are so many different forms of neuropathy that things said or done by individuals needs to be closely examined before you act on their recommendations.
2. There is a strong bias in PN info. When you examine medical literature from the far east or middle east or Europe the discussions on treatment are often different. Here the focus is on medical/big pharma approaches when neurologists talk of care.
3. I taught statistics, so I can say that medical references to PN are very, very, limited since the designs and stats used to come to conclusions about PN will take decades or at least many years. For example look at the Winsantor clinical trials.
4. Be careful in trying what people recommend since it can make your circumstances worse. Come to some conclusion about the physiological mechanisms at work. The mentors do a GREAT job of pointing people to relevant info.
5. If anyone says they can cure PN or improve PN and they have something to sell it is probably a scam. I've tried too many things when desperate. I also have wished for simple solutions.
6. There is often a dark side to PN. Depression is common among us. It is often hard to look at the positive versus the negative. Often people are saying have a great day etc. They had great upbringings or have resilient brains that were conditioned with good upbringings or wonderful experiences that helped them. I'm very lucky and have had a great life but it is hard to be positive every day!
7. There seem to be some metabolic issues that no one is talking about. For example I've been seen by 5 neurologists and diagnosed over and over. It seems like a financial windfall for many physicians since I get nothing from seeing them. I'm suspicious since I've taught hundreds of doctors.
8. In discussions with many health care providers people do seems to have some common problems that are not discussed. Many PN people have the following: diabetes (if you don't have it you will be treated like you have it almost always), high foot arch, thyroid disease, celiac disease (other common auto immune problems.) Look at what is recommended for these problems and you might find suggestions that work.
9. Do what you can to increase blood flow to your feet and hands. Talk to your neurologist about drugs like cilastizol that can improve blood flow to extremeties. Also look to topicals such as essential oils, castor oil, magnesium, and other products that you can confirm improve blood flow.
10. Exercise. Simply do what you can and find your limitations given your circumstances. There is always something that you can do to improve your blood flow.
11. Check your nutrition and supplements that you could use to assist your circumstances. Again don't rely on individuals who don't have sufficient educational training for changes that you might make. For example supplementing B 6 vitamins could be problematic to your condition.
12. On paper set up your plan. It requires some thoughtful consideration to making a plan. If you don't have a plan that you can examine and modify as you gain experience, well then you are likely to miss things as your condition deteriorates.
I wish you all good health and hope that a few of you can draw from my experiences. I am no expert and do not wish to provide guidance to anyone. Check with the mentors. They are properly trained to help you.

Thank you so much for this thoughtful and well organized post.
With respect, I'd like to comment on 2 of your points.
7. I doubt that many neurologists are making a fortune off people with PN. They do not profit from tests, imaging studies, etc. Furthermore, since PN is one of those diseases that is poorly understood and even harder to treat, patients with it may cause a bit of an aversion reaction. Physicians (believe it or not) are humans too. It is not helpful to the patient or physician for a patient to be angry or disillusioned. Unfortunately for all of us, this is a tough situation.
9. While theoretically promising, cilastizol has not yet proved efficacious for idiopathic or diabetic PN.

I truly feel for you. I never heard of dry needling. Is the tightness in your muscles due to neuropathy? I went to PT thinking that I could strengthen my glute muscles to the point where they were before "the disease" wasted them. The ankle weights they gave me may have given me back pain or else it was caused by the wear and tear of overuse. I am trying my own PT now--exercises for the spine as well as heat and ice on my lower back. Using Advil as well and justifying it in that it is better than a cortisone injection. I see that you are holding a little pet and I hope that gives you some love and support. Pets seem to know how we feel.

My points remain as stated. Physicians are people but like people many are not the best. Remember, the medical student who scores and performs the poorest but still graduates is still called doctor. One needs to be careful about selecting a doctor and this remains a problem since there are too few neurologists. Too many doctors do not read current literature, nor do they practice artful medicine where they look beyond the standard treatment. Accreditation requirements are minimal standards that a doctor must meet to meet continuing education for licensure. When the problems go beyond the standard gabapentin and pregab treatment an artful physician would look at the patient and discuss potential other approaches. BUT most will only perform the very least necessary. It is a catch 22 for physicians given lawsuits, but off label treatments are used all of the time. Thus cilastizol should remains an off label option for some.
Secondly many physicians do profit from all the testing. They are a part of a medical group. My general doc is part of a group and they have an independent lab, along with some cardiac testing. The profits from all of these tests are part of the group's income and adds to the physicians bottom line. The cost of medical treatment is a problem. In our system only those covered by insurance get the better treatment while those less fortunate are mostly overlooked. Where is our humanity for them? We pay way too much for medical care and physicians as a group look the other way since the current setup pays them very well. Again I generalize, there are always exceptions. Those I can admire!

Those are my foster kittens! I started this volunteer work after my early retirement as pain and fatigue caused me to leave my job earlier than planned. Fostering brings me so much joy! I have a cute little black kitten climbing on me right now!
When I get frustrated by my seemingly random medical issues, I Google “why does SFN cause ….muscle tightness and pain”. I know the answer, but this will link me to a few articles to review. I’m a nurse, so I like reading medical articles! The pain and knots or trigger points are thought to be an exaggerated response to normal overuse. Like lifting weights. Overuse for a specific goal, but the damaged nerves send emergency signals to the muscles, and they tighten up in defense. So it’s a losing situation. I do things anyway ( used my little weedeater yesterday) knowing I’m going to pay the price. Sounds like you’ve figured that out with your home PT routine.